We need to better understand Alzheimer’s caregiver burden

When my mom received her Alzheimer’s diagnosis, I felt so helpless. I was overwhelmed by the thought of what seemed to be an impossible journey ahead of her…and us.

One-by-one, emotions such as anger, sadness, and anxiety got the best of me. As a first generation – Indian single woman with a full-time job and multiple volunteer commitments, the fear of now being a full-time caregiver also set in 

 As a first generation Indian-American, from the very onset I noticed my mother’s diagnosis carried stigmas and misconceptions in the community.

Last year, a few family friends told me, “Your mom has done this to herself because of your father’s sudden passing twenty years earlier.”

I was shell-shocked and initially stayed silent.  But even then, I instinctually knew something needed to change. 

My family history is rich in overcoming adversity. My dadaji (paternal grandfather) was a Freedom Fighter and was Bhagat Singh’s accomplice during the Lahore Conspiracy. 

After serving time at the Cellular Jail, also known as Kala Pani in the Andaman Islands, he forged ahead with an illustrious career as a Member of Parliament representing Bettiah, Bihar. 

My dreams were to follow his footsteps so I too could be a change-maker in my community. Most importantly, I wanted to make him proud, and carry on his legacy.

Often, I think it would be incredible for more Indian-Americans to be vocal for causes they believe in, regardless of any cultural stigmas that kept them quiet in the past.

I hope my efforts advocating for Alzheimer’s ignite other Indian-Americans to realize the strength within them to be the change makers. We should own our heritage and learn to take charge of our futures. 

These days, I advocate and remain vociferous with my legislators even as my mom hallucinates, forgets my brother’s name, and cannot remember whether she ate lunch or dinner.

I advocate publicly and still I bathe her every day.  The emotional and physical obstacles in our daily tasks are layered on top of accommodating for the unplanned expense of respite services. Unfortunately, I’m not alone in this crisis.

According to the 2018 Alzheimer’s Association Facts and Figures Report, over 1.1 Million un-paid caregivers like me are living in Florida. Approximately two-thirds of those caregivers are women; over one-third of those dementia caregivers are daughters.

Alzheimer’s has short and long-term ramifications to our healthcare system. We must prepare now for what lies ahead. 

This is why I’m advocating for the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act.

This crucial piece of bi-partisan legislation will help address Alzheimer’s as the major public health issue that it is and promote prevention, early detection, and diagnosis, and collect and analyze data to better understand the caregiver burden. 

The future of Medicare is bleak.

And, with a monstrous disease such as Alzheimer’s, the future of our healthcare system relies on a cure. It is for this reason; other advocates and I champion the cause and pave the way. I believe this would be following in dadaji’s first steps and carries on his legacy.

Please join me in thanking Congresswoman Val Demings for cosponsoring BOLD and for her continued support as an Alzheimer’s Congressional Champion here in Florida!

Visit the Alzheimer’s Association at alz.org or call our 24/7 hotline at (800) 272-3900 for more information, or learn how you can get involved.